Post-mastectomy pain syndrome

On 3/21/2005 Lucy A. wrote:

Linda, I am so sorry that I have just noticed your mail from March 2004 regarding Post Mastectomy Pain. And I am so sorry for your pain. I had my lumpectomies and mastectomy 3 years ago and I am sorry to tell you this but I still have the pain. At least 3-4 days a week I have pain under my arm pit and across my chest - burning and stabbing nerve pain.I have been told by MD that it will go away!! But when? And now no one will give me any pain meds. !!! I have been to a pain center and they want to try me on neurontin which is used for patients with other nerve pain conditions but I am afraid of the side effects.I am thinking of trying acupuncture next. There is very little out there about the syndrome. Good luck with your search for relief. Lucy New York

Linda. It is now 2008 and I still have this horrible pain, They put me on Gabapentin and amatriplin about a month ago. Not many problems from this medication. Bad pain a few weeks ago and they changed my doze of Gabapentin and I got a alergic reaction to it so they changed the doze again. I am having sharp quick like electric pains in my arm pit today, so in between the Gabapentin I am taking a Tylenol and it is helping.  Thank GOD,

 How are you doing? Any new medication for you? I hope you are pain free by now...Let me know..

Jeannine

On 3/15/2004 Linda D. wrote:

Hello - I'm wondering if anyone else has had experience with intense, unrelenting burning pain after a mastectomy, in the armpit and on the incision. It's been about a month since my mastectomy and I haven't been rid of this pain one minute; it's only relieved to a certain degree by narcotics. My surgeon knows nothing about the syndrome, apparently. I've read a little online and plan to set up an appointment with some pain specialists, but I'm astounded that there's so little information about this. Nothing on Susan Love's site either. Thanks. Linda D.

I am a 36 year old women that is now 3 weeks post op mastectomy.  I have complained of burning since day one of my surgery and my surgeon only says to me "you shouldn't be feeling anything".  I haven't spoke of it again and just thought it is all in my head.  I know you all are further into your healing then I am but, thank you for not making me feel I am not alone.  Today has been my worst so far and I am afraid to take more meds but the pain is from the middle of my chest all the way to my elbow, cloths hurt when they rub against my arm, arm pit is very swollen and I just do not know what to do.  I am a single mom of two beautiful teenage boys that just do not know how to help their mom.  I have always been their strength and I sure have been having a hard time keeping a strong face around them. please...if someone has any advice please help

Tonya,

I am so sorry you are having this as well as the rest of us. You need to find a lymph massage therapist for the swelling. I ocassionally get lymphodema and it adds to the pain. I had a mastectomy 8 years ago.

Forget about the brave face with your sons. Let them help you in any way they can. They will love to do it for you! My son did.

Again, if anyone can handle marijuana...it's the only thing that really works. I can't do it as I get paranoid. But, for twenty minutes, I had no pain whatsoever.

Blessings,

Lynn

On 8/29/2006 Pam Anonymous wrote:

I have had this post mastectomy pain syndrome for about a year and a half. The most helpful thing I have found is the lidoderm patches. They help a lot during the day. At night I don't wear them and I have started back on neurontin recently though I don't much like it. It does fuzz out the pain some though and consequently helps with sleeping. I am trying myofascial release. I have only had two appointments to date. If anyone has had anything more specific or any particular luck, good or bad, with this myofascial release, I would be interested in hearing about it. this is a big drag and not well publicized. I think it should be. If anyone is interested in being interviewed for an article, please say so here so that we can be in touch. Sincerely, Pam Anonymous

Hi Everyone!  I just found this site today, so please bare with me.  I've had pain since the mastectomy in april 2006.  We have tried the gabapentin, to no avail.  I've tried topomax (don't do it - makes you crazy) tramadol, ugh! and most recent was tagretol.  Sorry about spelling, I'm not a nurse, nor can I spell.  Tegreatol has to be monitored so you don't get liver damage, and that must have been a worry to my Pain Dr hashe took me off it.  Plus wewanted to see it it was helping, and quess it was.  Now I'm on to try (use) Lyrica, 75mg/2 a day.  and since I whined so much this week about pain, Dr has prescribed Baclofen, but I need to research this before I'll swallow.

I was in OT for months, having myofacia release done, twice a week.  and after the sessions I'd feel good, but did it help overall?  after this week, I would say I'm back to where I started.  My health ins co won't pay for any more OT.  My local OT person was fabulous and gave me 6 more weeks as pro-bono.  

 On my bright side - I now know I'm not alone.  Thanks for posting and keeping this thread alive.

Hi everyone,

I'm investigating MSM for my eight years of pain.

Google chronic pain + MSM. I also have a book on the way. The Miracle of MSM.

I'm hoping this is a natural, drug-free way toget my life back.

Lynn

Good Luck Lynn

please keep me posted as I've now started yet another drug, cymbalta.  But for the most part the pain is minimal, and while I know drugs are bad for you, it is nice to get some relief.

Cathy B.

hi to all-

I had a double mastectomy with reconstruction in january of '08.  for 6 weeks following the surgery I had intense pain until finally a nurse practioner in the surgeons office said it was nerve pain.  I started 30mg of Elavil that night and within a couple of days the pain decreased in half.  they then put me on 400 mg of Neurontin.  I also continued taking a narcotic pain med.  this worked for about a year until I became a bit to dependant on the narcotic.  I got myself off of it and am now revisiting some pain :(  my doc increased the Neurontin to 900mg but that hasnt helped much at all.  my pain is a constant awareness....a sensitivity of these bags in my chest.  I have trouble getting to sleep at night.  it feels like a tightness but its mostly a constant feeling of the implants in chest.  I know its nerve pain but I wonder about whether to get the implants out.  I just want off of these medications.  if anyone has any info or advice about a situation such as mine I would really appreciate it.  none of the docs seem to know what to do except medicate.  Help!

 thank so much.

warmly,

Lisa

On 3/21/2005 Lucy A. wrote:

Linda, I am so sorry that I have just noticed your mail from March 2004 regarding Post Mastectomy Pain. And I am so sorry for your pain. I had my lumpectomies and mastectomy 3 years ago and I am sorry to tell you this but I still have the pain. At least 3-4 days a week I have pain under my arm pit and across my chest - burning and stabbing nerve pain.I have been told by MD that it will go away!! But when? And now no one will give me any pain meds. !!! I have been to a pain center and they want to try me on neurontin which is used for patients with other nerve pain conditions but I am afraid of the side effects.I am thinking of trying acupuncture next. There is very little out there about the syndrome. Good luck with your search for relief. Lucy New York

Lucy,

I am a 3 1/2 year survivor, Left mastectomy with reconstruction and suffered with pain.  If I did not work closely with physical and occupational therapists (I am a spech therapist), I would have never known about MYOFASCIAL RELEASE.  This is a physical therapy technique that works on the scar tissue that is hidden underneath the surface from the scraping and cutting of the tissue during a mastectomy.  It can cause shoulder pain and can even cause boney changes.  None of my surgeons referred me for therapy, they just gave me pain meds.  Myofacial release and soft tissue work is truly amazing.  Please get a referral for physical therapy and find a therapist familiar with these techniques.  Good luck!! Eva